Three Down Syndrome Resources Collaborate on Prenatal Testing Issues

The National Down Syndrome Congress, the National Down Syndrome Society, and the Global Down Syndrome Foundation recently announced a collaborative effort to provide multiple educational resources and tools to address prenatal testing issues in the Down syndrome community.

Earlier this month, the Global Down Syndrome Foundation and the National Down Syndrome Congress published the first Down Syndrome Prenatal Testing Pamphlet, an accurate, informative, easy-to-read resource for pregnant women and their families. The pamphlet is available in English and Spanish at downsyndrometest.org and is being distributed to pregnant women and to medical professionals who work with pregnant women. The creation of the pamphlet included input from medical professionals, parents, and survey results from more than 200 people in the Down syndrome community.

“NDSS applauds the efforts of NDSC and [the] Global [Down Syndrome Foundation] in getting this pamphlet out to women and families. NDSS has a long history of working on prenatal testing issues, and the NDSS statement on prenatal testing guides our involvement on this critical issue for our community, along with our Prenatal Testing Committee, made up of providers with decades of experience on prenatal testing, self-advocates, parents, board members, and staff,” said Jon Colman, president of NDSS.

In addition to the Down Syndrome Prenatal Testing Pamphlet, NDSC and Global support the prenatal testing information state advocacy initiative being rolled out by NDSS. As part of its effort to ensure accurate, up-to-date, and balanced information on prenatal testing, NDSS has created a first-of-its-kind toolkit that encourages states to pass legislation modeled after a bill recently passed in Massachusetts.

The legislation echoes the Prenatally and Postnatally Diagnosed Conditions Act (also known as the Kennedy-Brownback bill), which increases the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. This toolkit includes state model legislation and advocacy tools. NDSS is working with local Down syndrome organizations and its statewide government affairs committees to pass prenatal information laws in several states.

“The work of the NDSS and our pamphlet truly go hand in hand,” said David Tolleson, executive director of NDSC. “They are making the requirements of the Kennedy-Brownback bill—providing accurate information about prenatal testing and Down syndrome at the point of diagnosis—stronger on a state by state level. As they succeed, we will be there with our pamphlet to fulfill that requirement.”

“Working with NDSC and NDSS has been so exciting. As a parent, it is heartwarming to see so many excellent organizations coming together working on important global issues that affect hundreds of thousands of people,” said Michelle Sie Whitten, executive director of the Global Down Syndrome Foundation. “Besides NDSC, NDSS, and Global, we now have Down Syndrome Affiliates in Action, the International Mosaic Down Syndrome Association, and so many others. I honestly believe that today, more so than any time I have seen in the past, there is such a wonderful sense of passion, purpose, and professionalism in the Down syndrome community. When you put those three ‘p’s’ together, the impact we are having is truly astounding.”

NDSC, NDSS and Global all have important information about prenatal testing and facts about Down syndrome on their websites. To view that information, please visit:

Founded in 1973, the National Down Syndrome Congress is the oldest national organization for people with Down syndrome, their families, and the professionals who work with them. A 501(c)(3) non-profit advocacy organization, the NDSC provides free technical support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights.

Since 1979, the National Down Syndrome Society has worked to promote the value, acceptance and inclusion of people with Down syndrome. NDSS has about 350 affiliates nationwide. The NDSS National Policy Center works with Congress and federal agencies to protect the rights of people with Down syndrome, and educates individuals to advocate on local, state and national levels.

The Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.